New DX of DCIS

Farroutl

1. Hi...I'm new to this site. Can't say I have a lot of fear cuz I have strong faith in Lord. Guess I'm still reeling from DX cuz I'm really healthy. I'm 61 yo single woman high risk cuz I've never had children and late menopause @ 61. I'm really looking for support on this site. I Thor bout taking part in clinical study, but my tumor is high level (grade) Right now I'm involved with healing prayer and saw surgeon today. I've been reading a lot bout DC IS and it is being overtreated..gettin 2nd opinion next week

Farroutl

* menopause @ 59

Moderators

Hi Farroutl-

We wanted to welcome you to BCO. We hope you find the support you need here. A second opinion is always a good idea, we hope you find the treatment path that works best for you.

The Mods

tlfrank

From what I've read, DCIS is unpredictable - hence the treating of it with surgery followed by radiation. Better to be safe than sorry in my opinion - if you do nothing and it goes invasive then you're also looking at Chemo.

I didn't seek a second opinion, but maybe should have. Each of us on this journey chooses their own path - there are no rights or wrongs.

MTwoman

Farrout, I am so sorry that you've had to join our club! I've read the word "overtreatment" in conjunction with dcis recently as well. It is concerning to me, in that it seems not to take into consideration that many women are taking a greater role in their treatment decision making. If the medical community wants to reduce the amount of treatment, then they'd likely have to take options off of the table, and that negatively impacts our ability to make choices for ourselves; based on our own personal risk profile and considering our own risk tolerance. Another reason that it is concerning to me is that the medical community cannot say exactly which women and which dcis cells are the most worrisome with complete consistency, meaning they don't know which women are being "overtreated". As long as that second part is true, I wish they'd stop conjecturing on exactly how much treatment women "should" be getting, as it is an academic question. Please do let us know how we may support you!

Farroutl

Both of these options are depressing to me as I'm into alternative medicine and am not all that trusting of the Medical com'munity. I would be interested in hearing from women who've chosen lumpectomy without radiation?

Farroutl

I think women should be Center stage of their treatment modality! It's their bodies!

Farroutl

What I've read is that women who have low -medium risk tumor might consider getting involved with clinical trials that are occurring right now across the country. I've been told I have a high risk tumor, so I'm not a candidate for a study. Altho I'm looking @ all of my options because the Medical community is definitely saying now that DC IS is being over treated.

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MTwoman

Farrout, I understand that many in the medical community are saying that DCIS is "being over treated", having read the literature on dcis for the last 14 years or so. My point was merely that until they can consistently predict which cells will go on to become invasive and which ones won't, they shouldn't be thinking of taking any options off of the table. And there are no conclusive reproducible studies that show grades I and II tumors are okay to "under treat", as there must be a control groups that are randomly assigned to the study arms for best scientific method (RCT) and there aren't enough women in the country who would join a study that might put them in a "watch and wait" control arm or a "treat less aggressive than the gold standard" treatment arm to sufficiently power a generalizable study. So right now, the micro-environment, and other markers continue to be studied with the hopes that it will give the medical community a better understanding of how (and when and why) dcis progresses or is held in check.

LAstar

Beware of any article that discusses DCIS overtreatment without mentioning DCIS nuclear grade. Low-grade DCIS and high-grade DCIS are two very different issues with very different risks. Radiation is very effective in reducing recurrence risks, essentially halving the risk of dealing with this again. I had two lumpectomies with unclear margins, but my second lumpectomy found more DCIS behind a margin initially considered "clear" because DCIS is not necessarily consistent throughout the ducts. I think that this is where radiation is most effective. Best wishes in finding your treatment path.

tlfrank

LAstar - you've summed up my fears quite well in your comment about finding more. My surgeon did get clear margins, but I fear there is more there lurking. I'm supposed to start radiation tx this month if my genetic testing comes back negative for mutations. I suppose the fear never will go away.

LAstar

TLfrank, I'm 5.5 years out -- the scars fade and so do the worries. Even if something does pop back up again, I don't want to waste a minute worrying while I'm feeling strong and healthy.